Chicago boy's death from epilepsy turns parents into activists

By Tamara L. O'Shaughnessy

Editor

3/23/10 4:39 PM

Danny Did Foundation

Find resources, including a sheet of questions to ask your
child's doctor and links to seizure-related organizations,
at www.dannydid.org. The site also
lists ways to get involved and donate. The foundation also can be
found on Facebook and Twitter.

"Right now, at some hospital, a mom is walking in and saying,
'My child had a seizure today.' And it's going to happen tomorrow
and the next day and the next day. There's always going to be
somebody having a seizure. It's just as much for those people down
the road as for the people who are going through it now," Mike
Stanton says.

While research to find a cure is still vital, the goals of the
foundation are realistic, tangible and immediate, his brother, Tom
Stanton, says. "There is nothing we wouldn't do for Danny."
Already, the experts they've met with are seeing a movement that's
not going to be denied.

If they had only known.

That thought lingers through the busy mornings getting the kids
out the door to the quiet nights and all the hours in between for
Mike and Mariann Stanton, who are doing their best to survive the
unthinkable.

The death of a child.

If they had only known, Mike says, to ask doctors about the
worst possible outcome for 4-year-old Danny, who had the first of
four known nighttime seizures when he was just 2. If only they had
known about seizure alarm devices. If they had only known about
sudden unexplained death in epilepsy.

"If we had known that deaths could occur, we would have operated
a lot differently. The things we are doing now, we would have done
then," Mike says.

But they did not know.

Until it was too late.

Now the Stantons want to make sure other parents have the
information in time to save the next child.

A life full of children

Mike, a Chicago Northsider, and Mariann, a Chicago Southsider,
created a home together filled with love, laughter and the
boundless energy of children.

Mary Grace.
Johnny.
Danny.
Tommy.

Each unique in their own way. But it was Danny who possessed
what his dad calls a "specialness about him." Intelligent,
affectionate, athletic, compassionate, with big bright eyes that
mirrored his mom's, Danny liked to hug, especially those who needed
his hugs the most.

"He truly did enjoy his life. He really did. Every day. With
such gusto, he did. Just a robust kid, he took it all in and he
gave it all out, too," Mike says. "Danny really was special in that
way."

Life took a terrible turn on Sept. 20, 2007. With Danny snuggled
sleeping between his parents, his body clenched and shook, his eyes
rolling up.

"It was terrifying. It was absolutely terrifying to see it
occur," Mike says.

Swooping him up, they rushed next door to friend Pete Lazzara, a
Chicago Fire Department paramedic. Lazzara knew immediately the boy
he adored was having a seizure. At the hospital, an alphabet of
tests-CAT scans, EEGs, EKGs and MRIs-filled the night. Though
Danny's EEG showed abnormalities, Mike and Mariann remember doctors
telling them children sometimes have a seizure, then never
again.

In the many nights that followed, with Danny sleeping between
them, Mike and Mariann didn't sleep, alert for even the slightest
movement. "The thing is, we were right there. We could protect him.
We had medicine ready," Mike says.

A second seizure struck a month later, just before Halloween,
again as Danny slept. After the third, Mike and Mariann faced a
major decision: Putting Danny on seizure medication. It was a
two-year commitment with big potential for complications. But the
medication worked, not slowing Danny down one bit. "He was a champ
all along," Mike says.

When Danny moved back into his room with big brother Johnny,
Mike and Mariann still found themselves creeping into the boys'
room hundreds of times to peer closely into Danny's sleeping face
in the bottom bunk bed.

Just to make sure.

Nearly 22 happy, busy months passed.

No seizures.

Hope, then a nightmare

On Dec. 8, 2009, Mike and Mariann met with doctors about Danny's
latest EEG. The abnormalities, Danny's doctor told them, looked a
little better. "We walked out of there very heartened," Mike
says.

Four days later, Dec. 12, they awoke to find Danny's sweet mouth
ringed in blue.

EPILEPSY BY THE NUMBERS

More common than you think

Epilepsy and seizures affect over 3 million Americans of all
ages, at an estimated annual cost of $12.5 billion in direct and
indirect costs.

In Chicago and the surrounding region, there are as many as
125,000 individuals with epilepsy.

Between 5,000 and 7,000 new cases occur annually in the Chicago
area. n 200,000 new cases of epilepsy are diagnosed each
year. In the Chicago area, that translates to between 6,000
and 8,000 new diagnosed cases annually.

326,000 school children through age 15 have epilepsy. In
Chicago, that number is between 9,780 and 13,040 children.

Sudden Unexplained Death in Epilepsy (SUDEP)

Among people with epilepsy in the United States, up to 50,000
deaths occur annually from SUDEP, prolonged seizures and other
seizure-related causes.

The incidence of SUDEP is about 1 in 1,000 people with epilepsy
per year. This is at least 10 times the sudden death rate found in
the general population.

SOURCE: Epilepsy Foundation of Greater Chicago

As Mariann ran to get Lazzara, Mike lugged their little boy to
the big family room and began CPR. In his heart Mike believes
Lazzara knew their Danny was gone, but he worked to revive him, as
did the Fire Department crew, who also knew the family.

"They worked on him and worked on him and worked on him," Mike
says, reliving the horror as their other children watched. At the
hospital, doctors tried, too. Though officially pronounced dead at
8:21 a.m., doctors were still pumping his chest at 8:45, Mike says.
"Nobody wanted to let him go."

But they all knew. Danny was gone.

Tucking Danny's tiny hands into his chest, Mike and Mariann laid
down on the hospital bed and simply hugged their boy.

Nearly an hour passed. "He just got colder and colder. We just
kind of took him in," Mike says.

Strength to hold on

On the day Danny died, or maybe the next day, Mike remembers
talking with Mariann about how this could tear them apart.

"But we have three other kids. What kind of life are they going
to have if we can't work through this somehow? We both know the
answer to that. That's not something we're willing to take a chance
on. That's what kept us together," he says, sliding his foot to
stroke Mariann's.

They began his obituary, ending it with a poignant reminder that
would come to define the hard days that followed: "Please go and
enjoy your life. Danny did."

The funeral came and went. Life's activities began again.
Christmas came and went. Tommy's second birthday needed
celebrating. Lunches needed to be made for school every morning.
Spelling words needed to be drilled. Diapers needed changing.

Waking up every day continues to be difficult, they admit. Mike
yearns for nights he hopes are filled with dreams of Danny. "I hope
I get that," he says.

They cry in front of the kids. "We tell them we're OK, that
they're OK," says Mariann, grief clearly etched on her pretty face
even as she smiles with her kids. It's not always going to be like
this, she tells them.

Focus on others now

Mere weeks after Danny's death, something amazing began to grow
out of their grief. A non-profit, the Danny Did Foundation, began.
In no time, nearly 7,000 people signed on as fans of its Facebook
page, seeing daily photos of Danny living life to its fullest and
his parents' heart-tugging thoughts and memories.

The foundation's focus: To save other parents from such pain.
Mariann says they were never told and didn't ask, "What's the worst
possible outcome for Danny?"

The foundation is working with neurologists, medical tech
companies, researchers, government agencies and organizations to
make sure parents have the information the Stantons never received.
Mike and Mariann want parents to know about SUDEP, sudden
unexpected death from epilepsy, even though it's rare and doctors
are hesitant to bring it up to already scared parents.

"Our goal is for doctors to present the broad range of outcomes
that can happen and let the family base their decisions on having
the complete picture," Mike says.

Family friend Mary Duffy located a seizure alert device,
manufactured by a small company in Finland, something the Stantons
wish they had learned about before Dec. 12. Whether it's this
device or something else developed by experts, the foundation is
working to get a device approved by the FDA that could be as easily
prescribed by doctors after a child's first seizure and covered by
insurance as a nebulizer is for people with asthma.

"We hope this foundation grows and makes a difference in the
world, makes the world a better place, like Danny would have, like
he is," Mike says.

It's one parent, one doctor at a time. Mariann checks her grief
to answer other moms' questions. Even on Valentine's Day morning,
she opened her home to a stranger, a mother just starting the
journey with her daughter. What should I do, the mom wanted to
know.

"That's what this is all about. That's why we're doing it,"
Mariann says. "We find the strength in those moments to make sure
we are being as clear as possible and trying to give the most
information we can, to help."

They are also trying to keep Danny's memory alive, from sharing
with the world the 7,000 photos they have of him enjoying life to
helping 2-year-old Tommy, who is looking more like Danny every day,
remember him. "Tommy, where's Danny?" they ask him quietly.

"In my heart," Tommy says, tugging his shirt.

Danny Did Foundation

Find resources, including a sheet of questions to ask your
child's doctor and links to seizure-related organizations,
at www.dannydid.org. The site also
lists ways to get involved and donate. The foundation also can be
found on Facebook and Twitter.

"Right now, at some hospital, a mom is walking in and saying,
'My child had a seizure today.' And it's going to happen tomorrow
and the next day and the next day. There's always going to be
somebody having a seizure. It's just as much for those people down
the road as for the people who are going through it now," Mike
Stanton says.

While research to find a cure is still vital, the goals of the
foundation are realistic, tangible and immediate, his brother, Tom
Stanton, says. "There is nothing we wouldn't do for Danny."
Already, the experts they've met with are seeing a movement that's
not going to be denied.